aHUSUK’s next focus is the Clinical Priorities Advisory Group (CPAG)which is the latest hurdle to getting eculizumab for all in England who need it. We already have a compelling case for what it is like to get aHUS as AGNSS will testify but we want to add to this.
We would like members to complete a short survey ,one for adult patients and one for parents of children, to give us information of the treatments received in their personal experience of aHUS.
aHUSUK trustee Len Woodward said-
“The purpose of the survey is produce a comprehensive list of aHUS treatments and complications arising from the treatment and to gain some idea of their distribution over the common patient profiles.
Respondents can help aHUSUK demonstrate both the extensiveness and the burden of treatment to give health decision makers an understanding of treatment and complications which they may not be aware of nor associate with atypical Haemolytic Uraemic Syndrome.
Some of the more common issues are listed in the questions as a prompt, but it will be the detail of individual respondents other experiences which will be of particular importance and add to everyone’s understanding.”
If you are an aHUS patient in the UK ,but are not a member of aHUSUK then a copy of the adult or child version can be sent to you . We would really appreciate your contribution. Links available by writing to email@example.com